Just appalling - re previous post Crying night after night

Discussion in 'I care for a person with dementia' started by tryingmybest, Jan 2, 2019.

  1. Prudencecat

    Prudencecat Registered User

    Dec 21, 2018
    I've been following this thread and was really hoping things would go well for you. My mum was in hospital for 6 weeks after breaking her hip. When she came home against the hospitals advice she was really sleepy all the time for the first couple of weeks and the carpet cleaner was put to good use as she did get rather explosive. Luckily this seems to have settled down now. We have good days and bad days. She sometimes has nights where she is up and down, banging on the windows and trying to escape she's gone three days before with no sleep no idea where she gets the energy from. This is usually followed by a few days sleep. Probably no help to you but we sing with my mum surprisingly she knows more of the words than we do and this sometimes calms her down. I also don't care what she eats as long as I can get something down her healthy meals have gone out the window.
    I do hope that you can get some help we have carers four times a day and three of us working together to try to keep her safe. I know that my mum would be safer in a care home but it is a huge decision to make. We have another CHC assessment and care assessment at the end of the month and will make a decision after that.
  2. rosy18

    rosy18 Registered User

    Jul 23, 2016
    Like Susan I really can't offer any constructive advice but like Susan, just wanted you to know that I'm thinking of you and praying that your poor Mum starts to get some form of relief, like I said in a previous post Trazadone worked wonders for my Mum but my Mum has Alzheimer's. You just seem so alone and I know that feeling and until I discovered singing for the brain through Alzheimer's society where I could meet like minded people and able to take Mum out somewhere without worrying what might happen. Have you telephoned the Alzheimer's society and asked for any advice. Is there a carers centre at all near you. We have one here and I was able to take Mum.Do you have any Admiral nurses you could call upon.When Mum was first assessed by the dementia community nurses they came to see Mum every 2 weeks and a specialist doctor initially, it was them that put Mum on Trazadone. I know you say you are out in the country but surely you must be entitled to some help from somewhere!!!! Forgive me if you've already exhausted all avenues. My Mum and I were always very close and at one stage she just became so anxious all the time would lash out at me, have terrible hallucinations and just became so far removed from the loving Mum she had always been but I feel that was a horrible "stage" she went through and thankfully with the help of the med Trazadone and the progression of the illness things are now a lot calmer and Mum is a lot more settled.
    I feel for you big ((hugs)) being sent xx
  3. nita

    nita Registered User

    Dec 30, 2011
    I am really sorry that things haven't improved and sound really desperate. I just noticed a couple of things I can comment on. My mother had an underactive thyroid and was on thyroxine and the doctor prescribed her amitriptyline for pain - she didn't have any ill-effects but the drug didn't work for this purpose. It is also used, as in your Mum's case, for depression. I agree with what @Amy in the US has suggested that she may be constipated as they often don't worry about this in hospital and can come out severely constipated. However, if she didn't eat much in there and isn't eating now either, that may not be so.

    My Mum was extremely tired during the day for years - she fell asleep at the doctor's and elsewhere outside, even in the first year of her illness. She eventually became immobile partly due to arthritis and a lumbar wedge fracture but also I think because of the progression of her disease. The last 3and a half years she was bedridden. We managed to cope at home with that with the assistance of carers to do the hoisting (they wouldn't let me do it alone). Eventually, she wasn't even hoisted out of bed and just had pad changes and turning over. It was a slow decline and awful to witness. However, she became calmer as time went on. With the sleepiness, you do worry as, like your mother, sometimes she would sleep through a whole day and night, and that means not eating or taking medication. It was only when she became unresponsive (this happened twice) that I called the doctor. In both cases she had an infection and it developed into sepsis but she recovered in hospital.

    I looked up Meptid and it is an opioid drug - it sounds very strong. Does your mother take it for pain or because the doctors think her distress may be caused by pain? My mother suffered from chronic pain for 9 years pre-dementia but it had a devastating effect once she developed cognitive problems and she was in terrible distress. She had Fentanyl patches and oral morphine. Nothing really broke through the pain, but she eventually slept through the nights and was calmer during the days.

    I have read other people on here with mixed dementia take Memantine so it may be worth a try. Also the risperidone. But I would be concerned that you and she have to suffer the repercussions if it goes wrong. Would it be an idea for her to go into respite while they trial the new medication? My mother was in respite when she had a virulent water infection and cellulitis which made her paranoid and aggressive. I am afraid I just couldn't cope with it. When she came home, there were other problems but the worst symptoms, the raging paranoia and possibly delirium, had gone. Would her Deputy understand if you were to put it to him that you need a short period of respite and to see if a change of medication would help your mother? Do hope things are settling down at the moment.
  4. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    Ahh thank you. Yes I'm pretty fed up over the conflicting business about the drugs. It's not exactly made me very confident about these so called medical professionals! The psychiatric nurses from the Crisis Team are coming again on Monday after they've discussed things with a consultant, (although they did say they didn't think there was anything they could do), so hopefully after that they will send their notes to the doctor at the surgery.

    Mum's been terrible tonight so far. Crying, making all these awful distressing cat like noises and getting up and stumbling about without her frame on the landing. Then she just started spitting at me so I've had enough and come downstairs. How much more can one take? Oh well tomorrows another day.
  5. Ludlow

    Ludlow Registered User

    Jul 20, 2016
    SE England
    I'm so sorry you and your mum are having such an awful time. It must be so tough for you to stay strong.

    Have you read the AS factsheet on Drugs for Behavioural and Psychological symptoms in dementia? Although it says that Memantine should not be give for purely vascular dementia, it says that Risperidone (an antipsychotic) can be given.

    "Antipsychotic drugs may be prescribed for people with Alzheimer’s
    disease, vascular dementia or mixed dementia"

    It has been really useful for my mum in keeping her from paranoia which caused her to be frantic all night and it just might help your mum too. There are some health risks of course, but when quality of life is so poor, my view was that we had nothing to lose by trying it.

    Hoping you get some sleep tonight.
  6. shaktibhakti

    shaktibhakti Registered User

    Sep 5, 2016
    Yuo need to get HELP......beleive me i had care package but was very hands on with my mother & you sound like youve got 20x more than i had.....you need to care and look after yourself too...my mother thinks im not a nice daughter too...you`ll never win that one! Its the disease and they cannot and wont ever understand. My friend also looked after her mother 24.7 with day off i think.....two years of it.....awful
  7. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    Gosh. You and your Mum had a terrible time. Hugs. It's just awful isnt it? Interesting your Mother had an underactive thyroid. We shall have to wait and see on whether the amitriptilene works.

    Re the constipation she definitely doesn't have that. She's pretty regular in that way but as you say, she's not eating so wouldn't be that anyway. I think thats why the doctor who came out said to discontinue the Meptid in case it did cause that? It was prescribed for Mums pain in her coccyx 2 years ago but Ive been told to just give paracetamol every 4 hours now. I will ask the doctor if they can prescribe pain patches as your Mother had perhaps. I don't know if she's in pain. I ask her but she always says no.

    Re the Mementine she just has vascular not mixed so it was totally wrong the doctor suggested that.

    No I would not want to take any respite having seen how badly she coped in hospital in a strange place without me. I will somehow keep going!!
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    A care home is quite different from a hospital @tryingmybest
    Hospitals are always detrimental places for PWDs because it is not geared up towards dementia and very few hospital staff understand dementia. A dementia care home, on the other hand, has staff that understand and the whole place is geared up towards their needs. If you just cant cope a period of respite can give you a break so that you can continue. If you reach carers breakdown (a real risk, believe me) then you wont be able to care for her at all. You have to look after yourself too.
  9. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    Hi Canary. Yes I know its not the same at all and I must admit to being amazed how hospital staff seemed to be so dementia unaware in this day and age. I just worry from what other posters have said that respite for the pwds perspective often results in a further decline and therefore not always a good idea. I also secretly worry I wouldn't want to come back to it as I would feel even worse after experiencing freedom again!!
  10. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    We sound in a similar situation albeit Mum lives with me and we are on our own. Yes I do sing to her (I was a singer in what now feels another life) and she loves music but when she's in one of her paddys nothing I do seems to help.

    Regarding food I've stopped worrying too about a healthy diet. If I manage to get her to eat the tiniest morsel I feel quite elated!!

    I wish you well regarding your decision about your Mums future care. It's just so heartbreaking.
  11. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    Thank you. This certainly stretches one in every way dealing and coping with caring for someone with this awful disease. Yes I have read the factsheet and as I thought was correct about the Mementine but I stand corrected about the Risperidone but I don't actually feel Mums ready for such a drug yet.I guess you're right if it gets too bad there's nothing to lose!! I'm glad its helped your Mum. X
  12. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    Thank you. I'm so glad the Trazodone helped your Mum. Like you, Mum and I have always been so close so yes it's very upsetting when she lashes out or says horrible things and it hurts, no matter how many times you tell yoursrlf it's the disease not the person.

    Services are very patchy (as someone else said on here), and I think we must be in a place where there isn't anything for many miles. We are 30 miles from any of the large towns. Again Admiral Nurses don't operate here but I have used their helpline a couple of times. I think the main thing has been that Mum didn't go down the memory clinic route for diagnosis, but had a psychiatrist from the Court of Protection deem she had no capacity so we've never been "in the loop". Maybe now the nurses from the Crisis Response Team came and saw her last Monday they will come back with something when they return on.Monday. However, they did say they were unsure how they could help. We will wait and see!!
  13. Patrioted

    Patrioted Registered User

    Jul 4, 2017
    My heart goes out to you. I can feel your frustration. It is both inexcusable and indefensible that your GP’s are providing such poor and arguably dangerous healthcare decisions. If they don’t know what to do correctly they should refer you to a specialist that can. The dementia suffer can’t fend for his or her self and the medical profession is obliged to do right by them. This sounds like medical malpractice to me. Hire a lawyer and sue. As a minimum report them. If you don’t nothing will improve.

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